A week in the life of a chemotherapy patient

If you’re a regular visitor to my blog, or you follow me on social media, you’ll know that in February 2019 I was diagnosed with Hodgkin’s Lymphoma (a type of blood cancer) and am currently undergoing BEACOPP chemotherapy.

I get a lot of questions from friends and family about my treatment and how it’s going. Before I started chemo I had no real idea what it involved. I thought it might be helpful for me to keep a diary for a week and talk about my experience.

If you've recently been diagnosed with Hodgkin's Lymphoma and are about to start chemo yourself then this may give you an idea of what to expect.

My chemotherapy experience

For those who aren't aware, chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells in the body. You can read the full definition on the Macmillan Cancer Support website.

There are various types of chemotherapy. The type you receive depends on the type of cancer you have been diagnosed with. I started chemotherapy at the end of February 2019 and was initially given AVBD. This is the first line of treatment for Hodgkin's Lymphoma in the UK.

After two rounds of AVBD I had a PET scan to see how it was working. My consultant explained that previous medical studies have shown that the results of this mid-way PET scan usually indicate the final outcome of the treatment. I.e. if after two round of AVBD you have a negative PET scan, you are more likely to have a negative PET scan after completing the treatment (and will therefore be classed as in remission).

Unfortunately my PET scan came back positive. The results showed that the cancer cells had shrunk, but the AVBD chemo wasn’t working as well as they would have liked. So my consultant switched me to a different (stronger) type of chemo called BEACOPP (escalated).

Chemotherapy treatments are often acronyms named after the drug combinations used in that treatment. For example:

• AVBD involves four different drugs; doxorubicin (also known as Adriamycin), vinblastine, bleomycin and dacarbazine
• BEACOPP involves seven different drugs; bleomycin, etoposide, doxorubicin (Adriamycin), cyclophosphamide, vincristine (Oncovin), procarbazine and prednisone

In this blog post I'll be writing about my week of having BEACOPP chemo. Where possible I'll also try to reference how it compares to AVBD.

Monday

Today is the first day of my second round of BEACOPP chemotherapy. I have to be at the hospital for 10.15am, so my Nan picks me up around 10am. Usually I take a friend or relative with me when I'm having chemo, especially on day one which is the longest session. Mainly because it's nice to have someone to chat to!

I check-in at reception on the chemo day ward. They weigh me (as they do at the start of every session) and I take a seat in one of the comfy armchairs. There are four other patients already in the room, and I notice I’m the youngest (this is a pretty common occurrence). One of the health care assistants takes my observations (temperature, heart rate and blood pressure) then my nurse Paul comes over for a chat to see how I’ve been since my last session. This is my opportunity to raise any issues or side-effects I’ve been having.

When I was having AVBD the nurses would then warm up my veins with a heat pad so they could cannulate me with a needle before administering each drug. However I now have a PICC line; a thin tube that sits in my arm for the duration of treatment. They can connect the IV bags to my PICC line (and also use it to take blood samples) so I no longer feel like a human pincushion. With the cannula I could sometimes feel the drugs as they entered my vein, but the PICC line makes everything painless.

Paul cleans and flushes my PICC line, then hooks up my first IV drug. In total I’m having three IV drugs today; doxorubicin, cyclophosphamide and etoposide. I also take procarbazine and prednisolone, which are in tablet form.

In total this session takes around 4-5 hours. I pass the time by chatting to my Nan, reading and scrolling social media. A volunteer brings the lunch trolley round just after 12pm. I pick at my cheese sandwich, but I'm not that hungry. Before I leave I receive my TTOs (to take out) drugs. This is a huge bag with all the medication I need to take at home over the next few weeks.

By the time I get home I'm exhausted and feeling a little sick. However it's manageable as long as I stay on top of my anti-sickness tablets. I've also found peppermint tea helps with the nausea, so I try and have a mug every evening. Big thanks to the friends who bought me boxes of this stuff when I was first diagnosed!

My mum stays with my on the nights I have chemo, just in case there's an emergency. She makes us some dinner and we spend the rest of the evening chilling in front of the TV. I take my evening drugs and fall asleep shortly after Love Island.

Tuesday

The first thing I do when I wake up every morning is take my temperature. Chemotherapy is great at killing cancer cells. Unfortunately it can also kill off the healthy cells in your blood which fight infection. Chemo patients are therefore more at risk of developing infections. If my temperature ever rises to 38℃ or above I have to call the 24-hour emergency helpline and go straight to A&E to receive antibiotics.

Next I start my morning drug routine. My first drug of the day is lansoprazole. This helps to protect against indigestion, heartburn and acid reflux (common side effects of my chemo drugs). I take it as soon as I wake up, then wait 30-60 minutes before eating breakfast. Next I take my prednisolone (steroid) and procarbazine tablets, along with ondansetron and metoclopramide (anti-sickness). I've tried a few different anti-sickness drugs since beginning treatment, and these are the ones which have worked best for me.

My mum drives me to hospital for my appointment at 1.15pm. We go through a similar routine to yesterday, except this time I'm only having the one drug (etoposide). This takes around 2 hours. We get home by 4pm and I settle down on the sofa where I remain for the rest of the evening. I've been watching A LOT of TV recently. If you're looking for recommendations on what to watch on Netflix, I'm the girl to ask!

Wednesday

I repeat the same routine as yesterday; wake-up, temperature check and morning drugs, before making breakfast and jumping in the shower. When I had my PICC line fitted I was told not to submerge it in water or get it wet (due to the infection risk). My mum got hold of a Limbo PICC line cover for me, which has made showering so easy. It creates a waterproof seal over my arm so I can wash as normal.

My friend Tess picks me up at around 11.45am as we're heading out to lunch before my chemo session. We go to Miler & Carter as it's just down the road from the hospital and I hadn't been there before. Surprisingly for a steak restaurant they do a few nice vegetarian options.

Today's chemo session is almost identical to yesterday's. I even sit in the same chair! Some of the nurses do a double-take when they see me as I'm wearing my wig (usually I stick to hats and wraps for chemo). When I first lost my hair I used to feel nervous leaving the house with my wig on. I was worried you could tell it's not real hair, but I'm used to it now and lots of people have told me it looks pretty natural.

Tess drops me home at around 4pm and I spend another evening on the sofa. Boredom is one thing I struggle with on chemo days, but I have a few hobbies which keep me occupied. Other than writing this blog I also knit and do crafty stuff like my adult colouring book. I've also been reading a lot (make sure you check out my book reviews if you're looking for recommendations!)

Thursday

No hospital today! I still have to take my chemo drugs as usual in the morning, but it feels good to know I don't have to go back to the ward until Monday.

Unfortunately I have woken up this morning with what feels like the start of a cold. My temperature is fine, but I keep an eye on it throughout the day. It's easier said than done, but I try not to panic. There's the 24-hour helpline I can call for advice if I have any concerns. My white blood cell count was high before I started this round of chemo, so hopefully I'll be able to fight it off without having to make a trip to hospital.

My friend Louise has offered to re-do my nails for me this afternoon. Another side-effect of chemo is it can cause fingernails and toenails to become weak and brittle. The nurses advised me to keep my nails painted while I'm having treatment as it can help to protect them.

Mum baked brownies yesterday which are going down a treat. I definitely haven't lost my appetite since starting treatment! Apparently this can be a side-effect of the steroids I'm taking. I find that eating little and often is the best way to keep hunger at bay.

Friday

The district nurse is visiting today to take a blood test sample in preparation for my next treatment on Monday. Since I had my PICC line fitted I can no longer go to the regular drop-in clinic at the hospital. Sometimes I'll go back to the chemo ward to have it done, but this week they've arranged for me to have the district nurse come out to my house.

In the afternoon I pop into town with my mum so I can pick up the sleeping tablets my consultant prescribed for me last week. Week 2 was the worst on my last round of BEACOPP because I struggled to get more than 3-4 hours sleep each night. My doctor advised this is most likely another side-effect of the steroids. I tried every natural remedy I could think of but nothing seemed to work. Hopefully the sleeping tablets will help if it happens again.

This evening I'm meeting Si (the boyfriend) for a cinema date to see Rocketman. We've spoken every day this week by text, but this is the first I've seen him since Sunday, so it's nice to catch up properly.

One of the hardest parts of chemo is I never know how I'm going to be feeling day-to-day. Making plans is really difficult because I hate letting people down by cancelling last-minute. Every event I agree to comes with a caveat that I'll be there "as long as I'm well enough." Luckily my friends and family have been really understanding. There's been a couple of occasions where I've arranged to meet a friend but had to cancel because they've picked up a cold. It sucks, but it's not worth the risk of catching an infection which could put me in hospital.

Saturday

I don't have many plans for today. It's been chucking it down with rain all week so I haven't been able to get out much. Usually I try to go for a quick 15-30 minute walk every day, unless I'm feeling really sick. Before I was diagnosed I was very active (hockey and the gym most days). I can't wait until my treatment is over and I can start exercising again properly!

In the afternoon I Skype call my Dad and we end up chatting for over an hour. He lives in America so we always make time to speak properly at least once per week. It's hard when there's a 7-hour time difference between us, but it's much easier to keep in touch now compared to when he moved to the US over 10 years ago.

Sunday

Last week I found out I'd won tickets to the BBC Good Food show via a twitter competition (thank you @BrumHour!) I've been anxious all week about whether I'd feel up to it, but luckily my cold seems to have eased off and I wake up feeling pretty good. You have no idea how excited I am to meet the legend that is Mary Berry!

My mum is driving us to the NEC, so we leave the house around 8.30am and arrive just after 9. After spending most of the morning wandering around the stalls, I join the queue to get my cookbook signed by Mary Berry. While waiting I start to feel hot and a little faint*. I take my jacket off and try not to panic. After sitting down and drinking some water I feel better, just in time for when Mary makes her appearance.

*Updated to add: the following day I received the results from my latest blood test. It showed my haemoglobin has dropped quite low. If I feel any more tired or faint I've been advised to call the hospital. They'll then arrange for me to have a blood transfusion. Another fun side-effect of chemo!

Something unusual happens while we're eating lunch. A couple sits down next to us and, even with it covered up, they recognise my PICC line (which not many people do!) I chat to them for a while about my treatment and they wish me good luck. The more time that's passed since my diagnosis, the more comfortable I feel going out in public showing visible signs of my illness. One thing that makes me feel weird is when people stare (especially when I'm not wearing my wig). I'd much rather people ignore me or just ask questions if they're curious.

When I get home I see my Gousto order has arrived. I've been using the food delivery service for a few months now. Check out my vegetarian review of Gousto if you're interested in finding out more! The recipes are tasty, easy to make and it takes away the hassle of having to plan meals and go food shopping. I usually order 4 meals which last me most of the week.

And so concludes my week! Thank you sincerely to everyone who has made it this far. I appreciate it's a very long post, but hopefully you've found it useful.

If you have any questions please feel free to leave me a comment below. Or you can drop me a message on twitter or Instagram.

Image credit: Holding hands photo by Roman Kraft on Unsplash